Ian is 30 and lives with A-Typical Familial Partial Lipodystrophy. Through social media, he met Natalie who shared the same rare mutation of the condition. Despite Ian living in the UK and Natalie in the USA, they formed a very close bond. Natalie sadly passed away this year, aged 40. In this moving post, Ian pays tribute to his friend and opens up about his feelings of loss.
“In 2012 I was diagnosed with a rare condition called Familial Partial Lipodystrophy. After diagnosis I searched the internet to find out all the information I could about Lipodystrophy as I had never heard of this condition before. I came across the ‘Living with Lipodystrophy’ Facebook page and it is here I met my dear friend Natalie. I later learned that myself and Natalie share the same very rare mutation of Lipodystrophy, which lead to an instant deep-rooted connection.
I had never seen anyone that looked like me before, which made me feel more ‘normal’. I had always felt different from others, even family members. Myself and Natalie were in the same situation, as we were the only people in our families diagnosed with Lipodystrophy. I was so excited to meet her, as finally I felt like I fitted in and there was another person in the world just like myself with the same rare mutation and vice-versa.
Myself and Natalie become extremely close. We shared a bond no one can ever understand. She was like my sister, my soul twin. We fully understood each other. I love her not only as a friend, but also as part of my family. She inspired me to be a better me. Her love of life, her spirit, her dedication to advocate and raise awareness about Lipodystrophy, her dedication to helping others even though she was suffering herself. She was an amazing person and she really had a heart of gold.
Natalie tragically passed away in August this year, a couple of days after her 40th birthday. She was fighting Cardiomyopathy and was waiting to receive a heart transplant. She was such a fighter. She fought so hard and loved life. Even in her final days she was helping others and advocating for Lipodystrophy. I have never known such a beautiful, strong, courageous, amazing person in my life.
I watched Natalie suffer for many months. She really suffered. I never thought she would pass away though. I know her heart was giving up, but I honestly thought that God would not allow such a good-hearted person to die so young. I thought she would get a heart transplant on time. She had a lot of love and light to spread into this world.
Natalie’s death really hit me so hard, it felt like my heart had been crushed into a million pieces. I had lost my soul twin, my other me. I felt so alone. I loved her with all my heart.
I never had the chance to meet Natalie in person. I was due to go to the USA last year, but Natalie got too sick with her heart. I was planning to go and stay with her once she’d had her heart transplant and was better. We were both so, so excited to meet each other in person. I will now never get the chance to meet Natalie in the flesh and this breaks my heart, although I know she is now watching over me. I have gained a new Guardian Angel and Heaven has gained a truly beautiful soul.
Natalie’s death also made me question my own mortality. Yes, I knew about all the health complications, but seeing and loving someone with the same mutation as yourself suffer is so hard. I cannot describe how much this has broken me both mentally and emotionally. I know Natalie would want me to carry on, fight and be happy and therefore, I continue. The torch and her legacy has now been passed to me, although I am not sure I can fill such big shoes.
Natalie helped me more then she will ever know. Just by being there, seeing her posts and checking out her pictures on Facebook. Before I met Natalie, I used to think to myself; “What have I done to deserve such a devastating illness? Am I a bad person?” Although after meeting Natalie, and so many other good-hearted souls also suffering from Lipodystrophy, has made me realise it cannot be karma of some sort.
Although I still have my Lipodystrophy family I will forever feel alone, as I will never meet such an amazing person with my mutation. I will never see anyone else that looks like my twin. This is going to take a long time to process, but I carry on in Natalie’s honour. I will forever love her and miss her. She will forever be in my heart and soul. Natalie’s greatest gift to me was strength and courage. I know I met Natalie for a reason, to help me in all aspects of my life. I know when the day comes Natalie will be waiting for me in Heaven with a big hug and love.
I love you Natalie.”